Hi Terri: I seek your advice because no one seems to have an answer to my symptoms. Dr. EWH was consulted and he did not believe I have it. My story is this. On 5/15/2013 had protected sex with a woman friend with HSV2. It lasted not more than 10 seconds. On 5/29/2013 we had a passionate kissing episode where we rubbed our genitals together but were wearing clothes. Those are my 2 exposures. On 6/20/2013 I developed burning on the right side of my penis shaft. I applied steroid creams with some improvement. On 7/9/13 went to see an STD MD because the penis burning was unbearable and he dx me with "ballanitis" and rx me Clotrimazole cream with some improvement. I also tested negative with the biokit and HerpeSelect test (.08). Those tests were done 8 weeks post exposure. At that time Dr. EWH told me to stop testing and he would finish the thread of communication. Well, the penis burning sensation has been constant for about a month. I retested again @11 weeks post exposure with the HerepeSelect and it was negative again @ .11. I'm HSV1+. About 3 weeks ago I saw a urologist for these symptoms. I was also experiencing difficulty urinating, dysuria so he diagnosed me with prostatitis and rx me with Cipro. I stopped the Cipro because developed left knee pain. Today I saw another urologist and he did not have an explanation for the penis burning but did mention I should see a neurologist as it may be a "back issue". By now in addition to penile burning ( on the right side of my penis), the soles of my feet tingle and burn and feel pins and needles on both my buttocks. All of this appears to be Pudendal Neuralgia? I've read that HSV that can cause a pudendal neuralgia like picture. My question to you is this. I was perfectly fine until I had that sexual encounter. Now I have this horrible penis burning sensation. It is daily. I never had vesicles, blisters on my penis nor any where. Just this burning sensation. Can this still be HSV2?
I don't know what is going on with you, but it certainly doesn't sound like genital herpes.
The contact you had was very brief indeed, your tests are all negative and you've had not genital lesions consistent with herpes. Nothing here suggests herpes, but I do agree with your health care providers who suggests prostatitis or spinal compression of some kind as possibilities.
I hope you will begin to believe the tests for herpes and move along to look for another cause for your symptoms. You could get stuck in this way of thinking for years if you don't - trust me. I've seen it.
Thank you Terri for your reassurance. I pray very hard to my creator to allow me to believe those tests so I can move on but when one day you're on top of your world, subject yourself to an exposure (albeit in this case guess was minimal), and get these strange symptoms, it make's it difficult to believe the results of those tests. I'm like since I am HSV1+, and therefore a slower HSV2 seroconverter by nature, do I have to extend out my window period and therefore retest myself at the 16 week mark or can I feel confident that at 11 weeks post exposure I'm ok? This is causing so much anxiety! Tomorrow I have an appointment with a neurologist, hope he can shed some light on what I have. Will keep you posted.
I always recommend a final test at 16 weeks for accuracy. In your case, the risk is so very low I'm not clear that you need it. But for some people, testing is the only way they can move on without worry. Up to you.
Thank you. I guess maybe the root of my disbelief is that it's frequently posted in the Internet that genital herpes can present just with "burning" and no vesicles or ulcers. Are they wrong to say that? Have you ever seen a case without the "lesions"? Maybe the condom I used was old and had microperforations? Just trying to find an answer to my symptoms.
Thank you Terri. Yesterday anxiety got the best of me and I went and got tested. I needed 3 more weeks to go to make it 16 but couldn't wait. Tested negative with the biokit at week 13 post exposure. Should that make me feel a little better? Is that a good test?
Want to give you follow up to my situation. To make a long story short, the only lab that has turned up positive in me was for Lyme disease. I initially tested negative with the Quest lab but researched that there is a significant false negative rate with that test so I ran my labs through a lab called Igenex and there my results came back positive. I read that Lyme can cause genital pain, swollen lymph nodes, and joint pains. My neuroses regarding HSV got to me and I tested again for HSV, this time with Lab Corp and it came back < .91 at 18 weeks post exposure. However, I must admit that I did take 3 grams of Valtrex 16 days before the test and 2 grams 1 month before the test. I took Valtrex to see if it would help my pain. It did and didn't help. Again, I had a protected sexual encounter and have never developed vesicles or ulcers. Should I believe this test at 18 weeks even though I took Valtrex sporadically?
Thank you Terri. I failed to mention that at week 15 I tested with the HerpeSelect test and it came back negative at 0.48, it had been 0.11 at week 11. I believe EWH or HHH state that fluctuating numerical values in the negative range are meaningless. That is why I retested at week 18. But I should have tested with the HerpeSelect rather than with Lab Corp to see where those numerical values are. Oh well.
I agree totally with Dr. Hook and Dr. Handsfield. You are not infected. Your contacts were so limited, I don't believe you did have any risk, but the repeatedly negative antibody tests confirm this.
The trick for you now is taking these results and our advice and start believing it deep in your heart. There is such an interesting thing that happens to people who believe, at some point, that they are infected with herpes genitally. They simply cannot easily accept this very positive information! I'm not sure why, but in spite of all sorts of evidence to the contrary, they still believe they might really be infected.
Your task now will be to accept these results, quit testing and live life well. Anything else is not acceptable to me!
Thank you Terri. I tested myself one more time. It was with herpeselect and it came back 0.25. I'm done with this nightmare. However, today I became puzzled as to my "clinical condition". I saw an ID specialist regarding Lyme disease. He doubts that I even have Lyme. He said the lab that was used for the Lyme tests is known for their false positives. He said I don't have anything. I told him the horrible burning pain in my penis is now subsiding but I've been taking doxycycline for 1 month. Did the pain/neuralgia improve because of Doxycycline or all this time these symptoms were "genitally focused anxiety"? I'm so confused. The pain I felt was so real. I remember when the pain came on I was not worried about herpes at that time. I became worried of herpes after the pain developed. I'm also worried because he said the pain may have been due to some "viral neuralgia". I had laid it to rest after that negative herpes test at 4 months and now I'm reliving it somewhat again. Don't know what to do. Perhaps I should not have seen him as my symptoms were improving. I'll just stop all antibiotics and observe. Should I retest again at 6 months? Something was causing my pain. That pain was real.
Thank you Terri. This week I saw a Lyme disease specialist. He did not state my positive Lyme tests were false positives. He repeated my labs and sent them to other laboratories in the USA to confirm the previous results. If you don't mind I'll update you on my results and clinical progress. I hope others can learn from my experience.
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